Always follow the advice of the patient's care team.
Support for Caregivers
Helpful Tools for Caregivers
- MyMedSchedule.com offers free web tools and smartphone apps to help you track and manage medications. Use it to create a schedule of all the patient's medications and even get reminders when a prescription may need to be taken or refilled.
- SignUp and Lotsa Helping Hands let you create checklists of specific tasks that others can help with. Use the sites to decide who is best suited to do certain tasks and create a schedule that works best for everyone.
- CaringBridge is a free, secure website that allows you to set up a personal web page where you, the patient, or a member of your volunteer network can post updates on the patient's care and progress. Visitors to the site can also leave messages for the patient.
Building a Caregiving Team
While many people successfully make it through stem cell transplant with only one caregiver, having two or more caregivers can help. This allows each caregiver to take a break, focus on other responsibilities, take care of their own health and other needs, and return to caring for the patient feeling more refreshed.
To build your caregiving team, start by setting up a network of people who can help. This could be other family or friends who offer their time. It can also be helpful to choose a close friend or family member to be in charge of and help coordinate your volunteer network.
There are many ways that friends and other family members can help. They can:
While it may be hard to ask for help, keep in mind that family members and friends often want to be helpful, but don’t know what to do. Your suggestions will make it easier for them to help in a way that is truly useful to you and the patient.
It is also a good idea to identify a person(s) who can be ‘back-up’ for you as a caregiver in case you become ill yourself and are not able to care for the patient.
Here are eight ways to get meaningful help:
While many people successfully make it through stem cell transplant with only one caregiver, having two or more caregivers can help. This allows each caregiver to take a break, focus on other responsibilities, take care of their own health and other needs, and return to caring for the patient feeling more refreshed.
To build your caregiving team, start by setting up a network of people who can help. This could be other family or friends who offer their time. It can also be helpful to choose a close friend or family member to be in charge of and help coordinate your volunteer network.
There are many ways that friends and other family members can help. They can:
- Go grocery shopping
- Prepare meals for other members of the family (meals for the patient should only be prepared in the patient’s home by a family member or caregiver)
- Help with child or elder care
- Do yard work
- Help with transportation to/from appointments
- Help with household tasks
- Help organize fundraising events
- Keep the patient informed about activities at their workplace
- Send cards, letters, and videos of support
- Sometimes, co-workers will donate their sick time or vacation days to help a caregiver who needs to take time off to care for the patient.
While it may be hard to ask for help, keep in mind that family members and friends often want to be helpful, but don’t know what to do. Your suggestions will make it easier for them to help in a way that is truly useful to you and the patient.
It is also a good idea to identify a person(s) who can be ‘back-up’ for you as a caregiver in case you become ill yourself and are not able to care for the patient.
Here are eight ways to get meaningful help:
- Prioritize tasks. Caregiving, like any job, is made up of lots of individual tasks. Not all tasks are equally important. The challenge is to know the difference and to prioritize tasks based on importance.
- Recognize that asking for help is a sign of strength, not weakness. It means you truly have a grasp on your situation and have come up with a proactive, problem-solving approach to making things better. Asking for help will ultimately help both you as the caregiver and the patient.
- Create a list of tasks that need to get done in any given week. When you see how long the list is, you'll quickly understand why you are so tired!
- Group your tasks into categories, such as personal care tasks, transportation, and household chores.
- Think about which people you or the patient know who have strengths in different areas. For example, some people are better at providing a listening ear and providing emotional support; others are better at providing more concrete support and doing specific tasks. These are different types of support, but both are useful.
- Write down your caregiving worries. Putting your thoughts and concerns down on paper (or on your laptop, computer, or phone) can help process some of the feelings you may be having. It can also allow you to think clearly about what help you may need to reduce stress.
- Before you reach out for help, share your lists with someone you trust – a friend, social worker, therapist, or clergy member, for example. Then, take a deep breath and ask for help or guidance in resolving your worry.
- Don't get discouraged if some of the help you need is not available. Think about another option for the person you asked or move on to someone else. It takes perseverance and is worth it. The goal is better care for your loved one and yourself.
Getting the Support You Need and Connecting with Other Caregivers
As you go through the transplant caregiving process, remember that it is important for you to ask others for support when you need it. Even though you are the caregiver, no one person can manage this on their own. Here are some helpful tips:
As you go through the transplant caregiving process, remember that it is important for you to ask others for support when you need it. Even though you are the caregiver, no one person can manage this on their own. Here are some helpful tips:
- Set up a separate support system for yourself. Trusted friends, a clergy member or spiritual advisor, a hospital social worker, and a community therapist or counselor are just a few of the most used sources of support during the transplant process.
- Keep a journal and carry it with you. Write down everything. So much is said and done during the transplant and recovery process that remembering it can be hard. If writing it all down is difficult, consider taking notes with a recording device such as a recording app on your smartphone or tablet device, or a tape recorder. You can also keep a separate journal just for you, as a place to write down your thoughts and feelings.
- Take time to recharge yourself. Try to eat healthy meals, exercise, and get enough sleep. Carve out some alone time to take your thoughts off the situation at hand. It's OK to read a book, watch a movie, or go for a walk. It's also good to take mini-breaks throughout the day.
- Learn to accept help. Try to avoid the most common mistake: thinking you can or need to do it all by yourself. Friends and family want to help. Providing specific suggestions on how they can help can bring you some important relief and allow them to be helpful in ways that are useful to you. If you take care of yourself by accepting help, you are enabling yourself to take the best care of the patient.
- Set up a system to communicate with others about the patient's progress. Everyone who knows you or the patient will have questions – most often, “How is everything going?”. Consider creating a page on CaringBridge or use Facebook to keep friends and family informed. Create a new message on your voicemail or as your email signature every few days to let people know how you and the patient are doing.
- Be flexible and patient. Focus on things you can control and try to let go of things you can’t. Most importantly, try to maintain a sense of humor and a positive outlook. It’s been said many times, but it is always true: try to take it one day at a time and stay in the moment. Doing so will make things feel less overwhelming..